Life with MS & EDS

January 14, 2009

Delaying Kindergarten

This morning we met with a nice group of people at our school district to hear about the transition from early intervention to kindergarten process.  There was the supervisor of special education, a school psychologist, someone from the Intermediate Unit (that’s where early intervention is coordinated here) and someone else.

For the past couple of years we’ve been on the fence about when Little Sister would start.  This past summer we were about 90% sure that she would stay in pre-school one extra year.  Then we received the “based on your child’s birthday, she is eligible to start kindergarten in Sept. 2009” letter.  There was an option for a transition meeting.  We decided to set one up so that we could talk with the school district and ensure we knew all of our options.

Our options were:

1. Sign her up for kindergarten for the 2009 – 2010 school year and have her evaluated to determine what services she may receive.

2. Have her stay in pre-school and receive the same services she does currently (which are physical therapy and occupational therapy, once a week each) and start kindergarten during the 2010-2011 school year.

We did learn that if we sent her to private kindergarten she would not receive the same services.  They offer very limited services to these children and PT and OT are not on the list.  So, Little Sister would have to remain in a pre-school setting.  That was okay.  We’re happy with her pre-school.  Until recently, we thought we’d do what we did with Big Sister who went to private kindergarten for a year and then started public kindergarten.  We did that for a number of reasons and it worked very well for her.  But, this isn’t an option for Little Sister and we’re okay with that.  It’s more important that she gets an extra year of PT and OT than it is for her to be more ready to learn how to read.

After they explained our choices, they asked about Little Sister’s strengths and weaknesses.  I am not sure we gave them everything we could have if I had thought this one through before hand, like I do before IEP (Individualized Education Plan) meetings.  I think we gave a pretty accurate portrayal of what she can and cannot do.  Her hypotonia (which is caused by Ehlers-Danlos Syndrome, hypermobility type) affects her in a number of areas.  While she’s on track cognitively (she knows her letters, numbers, asks great questions, was quizzing me last night at dinner about what starts with the “ch” “t” etc. sounds, and so on), there are many gross and fine motor things that she just cannot do.  She’s 4 and a half years old and not potty trained (still in pull-ups, rarely uses the potty).  That’s certainly our biggest problem right now (I cannot imagine her going off to kindergarten without being potty trained!)  She cannot sit still (moves constantly to keep her balance.)  She doesn’t have a lot of endurance (tires very easily and her skills rapidly decline.)  She’s just starting to alternate feet when climbing stairs and forget going down a full flight of stairs without hesitation, holding hands, or going down on her bottom (thankfully we have a split-level house with short flights of stairs.)  Her fine motor isn’t great (she switches from right to left back to right again when her hands get tired; she’s just now learning to draw basic shapes, but little else; she’s working on pre-writing skills using Handwriting Without Tears, which is actually going pretty well!)

They asked what kind of therapy she gets now and how often.  We said that she was just discharged from private OT since we were supposed to be doing aquatic therapy there, but they lost access to the warm-water pool.  They did ask if she has MAFOs and we said that she wears DAFOs (Dynamic Ankle-Foot Orthotics) and that she’s switching to Sure Steps (should allow her to have more movement in her toes.)  They also asked about social interactions.  She’s not a budding socialite, but she does okay with friends.  We also talked about her developmental milestones (walked at 26 months, etc.) and the medical testing she’s had (brain and spine MRI, EEG, genetic testing, etc.) and we talked about her Ehlers- Danlos diagnosis.  I’m sure they asked some other things, too, but I’m drawing a blank.

They explained how kids qualify for services.  There are 13 areas (they didn’t list them, so I’ll have to look them up.)  They did say that since she doesn’t qualify for speech (that was dropped last summer when her speaking really improved), that she’ll have to qualify based on her medical condition.  Thankfully medical is one of the areas.

They asked if we wanted to proceed with the evaluation process.  We could always change our minds and hold her back a year at any time (preferably by the kindergarten registration cut off of May 15th so they would have adequate time to do any evaluations.)  If we went forward, they’d meet with her teachers and/or therapists for input, watch Little Sister in her classroom, do evaluations, review existing paperwork, etc.  At this point we told them that we think it’s best for Little Sister if we wait a year.  I couldn’t tell based on our conversation if they thought she’d qualify for services or how many she’d be able to get, but I did get the feeling that they thought we were making a good decision by deciding to delay kindergarten a year.

While I’d love to know what the evaluators would think of Little Sister, I really don’t want to waste anyone’s time.  My curiosity can wait a year.  It seems that Little Sister will certainly benefit from waiting a year.



  1. Hi

    I read your post with a lot of interest. I wish I knew where you lived as you were talking both about my job and my LOVE. I am a PT I’ve worked in the public school system for over 20 years. I have worked solely in our preschool program for over 5 years as a quasi admin and a PT ( it’s how I survive having MS and also working)

    Some of yhe things you said don’t make sense. I know each state is different, but there is also alot that is the same since it is all based upon federal law. First of all it doesn’t make sense that your daughter can’t get her OT and PT while going to a private school. I would really like to talk more please send me a private email and then we can exchange more info or call each other.

    I hope you don’t mind me writing but some of what you wrote just didn’t sit right with what I know.

    Take Care GG

    Comment by GG — January 14, 2009 @ 6:33 pm

  2. Hi GG! I’m in Pennsylvania. They were saying that services were very limited for private kindergarten. I think that would be the case because we’d be choosing to send her to private school. I think if it was decided that a private school best meets her needs then they would provide services there, but we didn’t get into that. Right now she’s in the “least restrictive environment”. She doesn’t qualify for pre-school through the early intervention program, so she’s a “typical daycare kid” (meaning we pay for pre-school) and we chose a place that has Intermediate Unit kids, too, so that she could get her services there. I’m not sure if this clarifies things or not. I’ll definitely drop you an e-mail soon.


    Comment by mseds — January 14, 2009 @ 6:43 pm

  3. […] • Blog: Delaying Kindergarten ” Life with MS & EDS […]

    Pingback by EDS Alert Newsletter No. 30 « EDS Alert Newsletter — March 24, 2009 @ 12:17 am

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